Abstract Cerebral cavernous malformations (CCM) are lesions found in the brain and spinal cord comprised of abnormal blood cells, which bleed sporadically.

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Abstract Cerebral cavernous malformations (CCM) are lesions found in the brain and spinal cord comprised of abnormal blood cells, which bleed sporadically causing serious neurological deficits (Angioma Alliance, 2010). Choices in treatment for CCM include symptom management or surgery. Doctors provide recommendations about the decision to have surgery, but the decision is often ultimately left up to the patient. The present study evaluated the factors that affect patient decision making when patients had a choice to undergo surgery. Participants rated six factors on a scale from 1 to 4, indicating importance for decision-making. Factors rated as important in deciding whether or not to have surgery included fear of symptoms getting worse, the availability of an expert surgeon, doctor’s opinion of surgery, and presence of disabling symptoms. Results indicated that these factors were significantly more important than having the means to pay for surgery or social support during recovery. Ratings of the importance of these factors were not different among patients who chose to have surgery and those who chose not to. Results have implications for supporting medical decision making of patients with CCM and other conditions with uncertain treatment outcomes. Factors Affecting Surgery Decision Making in Patients with Cerebral Cavernous Malformation Christina Mutschler, BA., Bridget Klest PhD. University of Regina, Regina SK, Canada Social Context, Health and Trauma Lab Patient Decision Making in Elective Surgeries Few studies have looked at the factors that affect decision- making in non life-threatening conditions. Elective surgery, where the decision to have surgery is left up to the patient and abstaining from surgery will not result in death, is used as a treatment method in some Preservation of quality of life, degree of impairment in physical functioning, doctor’s opinion, and improving survival rates have been shown in the literature to be important factors in patient decision making on whether or not to have surgery for other various conditions (Anderson et al, 2013; Fisher et al, 2012; Jorgensen, Young, & Solomon, 2013; Murray et al, 2008). Purpose The present study evaluated the factors that affect patient decision making when patients had a choice to undergo surgery. Participants rated six factors on a scale from 1 to 4, indicating importance for decision-making. Method Participants were part of a larger online study that was recruited from the Angioma Alliance Patient Registry. Participants were selected for the present study if they answered “yes” to the question “Were you given a choice to have surgery” (N = 134). A total of 75 participants (56%) reported having had surgery one or more times (62 have had surgery once, 7 twice, 1 three times, and 4 participants have had surgery four times). Factors rated as important in deciding whether or not to have surgery included fear of symptoms getting worse, the availability of an expert surgeon, doctor’s opinion of surgery, and presence of disabling symptoms. Results indicated that these factors were significantly more important than having the means to pay for surgery or having social support during recovery. Ratings of the importance of these factors were not different among patients who chose to have surgery and those who chose not to. Results Factors rated as important in deciding whether or not to have surgery included fear of symptoms getting worse, the availability of an expert surgeon, doctor’s opinion of surgery, and presence of disabling symptoms. Results indicated that these factors were significantly more important than having the means to pay for surgery or having social support during recovery. Ratings of the importance of these factors were not different among patients who chose to have surgery and those who chose not to. Cerebral Cavernous Malformation CCM are well-defined lesions of potentially significant size that are discoverable on an MRI or CAT scan, and may be present with disabling symptoms. When accompanied by symptoms, patients who have CCM can experience seizures (about 36%), neurologic deficits (either progressive or transient), hemorrhage (up to 25%), or headaches. The two main treatment options for patients with CCM are surgery or symptom management. The removal of lesions through surgery may help prevent subsequent bleeding, control epilepsy and prevent further neurological deterioration. Cerebral Cavernous Malformation CCM are well-defined lesions of potentially significant size that are discoverable on an MRI or CAT scan, and may be present with disabling symptoms. When accompanied by symptoms, patients who have CCM can experience seizures (about 36%), neurologic deficits (either progressive or transient), hemorrhage (up to 25%), or headaches. The two main treatment options for patients with CCM are surgery or symptom management. The removal of lesions through surgery may help prevent subsequent bleeding, control epilepsy and prevent further neurological deterioration. FactorNMeanStandard Deviation Doctor’s opinion Disabling symptoms Fear of symptoms getting worse or developing new symptoms Availability of an expert surgeon Means to pay for surgery (through insurance or otherwise) Availability of support during recovery Table 1. Means and standard deviations of factors related to decision-making about surgery. Discussion Results indicate that a variety of factors affect the decision making process of individuals who have a choice to undergo surgery to remove CM. It appears that symptom severity, the fear of symptoms getting worse, and doctor’s opinion are most important in surgical decision-making. The results have considerable implications for individuals who have a choice to undergo an elective surgery. Acknowledgements Thank you to the Angioma Alliance and all of the participants in the present study.